Discussions By Condition: I cannot get a diagnosis.

Over five years with no diagnosis, symptoms all over

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: LynnSnow
  • June 22, 2012
  • 07:16 AM

Since high school (and some as early as childhood), I have battled many, MANY health issues that include:

Chronic tonsillitis and tonsil stones
Chronic and debilitating pain in immense amounts (especially shoulders, hips, legs)
Arrhythmias
Recurrent rash on arm
Chronic and debilitating fatigue
Migraines with and without auras that have turned into hemiplegic migraines in recent years
Asthma
Documented weakness in the right side of my body
Recurrent infections of all sorts (mainly yeast, sinus, and bladder)
Inability to read properly (perceive written word...I'll explain later)
Hip and spine pain (explanation for this too)
Growing skin and vision photosensitivity
Breast fibriods
Irregular menstrual cycles
Chronic nausea, diarrhea, digestive pain
Ovarian Cysts
Bartholin Cyst
And most recently a large amount of blood in urine
As for tests I've received over the past few years:

Ova & Parasite Screening (neg)
Pap smears and STI "brushing" (neg for everything except yeast)
Occult Blood (neg)
Stool culture (neg)
C. Difflicile Toxin A & B (neg)
UGI With Small Bowel (barium swallow) (neg)
H. Pylori (2) (neg both times)
Comp metabolic panel + CO2 (Very low alkaline phosphatase)
CBC w/auto diff (5) (many, many different off values)
CT scans of pelvis and abdomen (ovarian cyst found)
Lipase, Serum
Lipase (Low, outside standard range)
Amylase
Basic metabolic panel
Hepatic function panel (total proteins high)
Hemoglobin A1C
Glaidin Antibody
Celiac Panel (Was told it came out negative, had cut gluten entirely out for over a year when tested. IGA Serum very low.)
CT Brain Scan
Brain MRI (a year after brain CT scan, mentioned a "small posterior fossa arachnoid cyst vs. mega cisterna magna" that had gone unchanged for the past year. First I had heard about it)
Anti-Streptolysin O Screen W Reflex Titer (2) (both positive, years apart)
Strep Group A Culture (Positive)
"T4, Free" (average value)
Thyroid Stimulating Hormone (3) (average values)
Basic Metabolic Panel w GFR
Strep A Rapid Assay w/Optic (positive)
Lipid Profile (low LDL:HDL ratio?)
Lyme Antibody (neg)
Rheumatoid Factor (neg)
ESR (neg)
C Reactive Protein
ANA Screen (2) (First years ago positive, recent one neg)
Uric Acid
Many EKGs, one of which was in the ER where the doctor told me to see my cardiologist immediately due to the fact he thought there could be a possibility I have Wolff-Parkinson-White Syndrome)
Event monitor (Found what cardiologist called "basic arrhythmia", though doctor did not listen to my concerns)
Vitamin D (insufficient. I take multivitamins and eat fairly well, lots of veggies, so I was surprised.)
And most recently:
Urinalysis ("Large" amount of blood in urine, WBC present)

Urine Culture (neg)
I have been on every antibiotic known to man it seems like. I get recurrent tonsillitis 2-4 times a year. I am always battling infections of some sort.

Living every day is a battle. The pain in my joints is immense. I can barely stay awake for four hours at a time. I get tunnel vision at work due to the pain and fatigue. I've had xrays of my back and hips to find that I have spine adjustment issues and a very shallow and high hip socket on one side, so that explains a little bit of my issues, but it doesn't explain everything.

I've been tested for lyme, lupus (or so my doctor thinks. I think maybe she used the wrong tests, or didn't use them all), and RA. I have had constant positive strep tests, so I'm considering this to be an issue.

I'm at the end of my rope and my budget. I rack up thousands of dollars of bills a year with tests and visits for the incidental issues, and I only work part-time for minimum wage. I cannot keep doing this.

If anyone has any suggestions, please help.

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2 Replies:

  • I had a lot of simular problems with seeing doctors. My sister was actually the one who was diagnosed, I'm still looking for approproate doctor, but NOT willing to go out of state to do so! But here's something to look into, Ehlers-Danlos syndrome. It's hard to diagnoise, unless you are well documented. Here is a website that might help you. Good Luck in your journey http://www.mayoclinic.org/ehlers-danlos-syndrome/?mc_id=comlinkpilot&placement=bottom
    Itmustsnow 1 Replies Flag this Response
  • Since high school (and some as early as childhood), I have battled many, MANY health issues that include:Chronic tonsillitis and tonsil stonesChronic and debilitating pain in immense amounts (especially shoulders, hips, legs)ArrhythmiasRecurrent rash on armChronic and debilitating fatigueMigraines with and without auras that have turned into hemiplegic migraines in recent yearsAsthmaDocumented weakness in the right side of my bodyRecurrent infections of all sorts (mainly yeast, sinus, and bladder)Inability to read properly (perceive written word...I'll explain later)Hip and spine pain (explanation for this too)Growing skin and vision photosensitivityBreast fibriodsIrregular menstrual cyclesChronic nausea, diarrhea, digestive painOvarian CystsBartholin CystAnd most recently a large amount of blood in urineAs for tests I've received over the past few years:Ova & Parasite Screening (neg)Pap smears and STI "brushing" (neg for everything except yeast)Occult Blood (neg)Stool culture (neg)C. Difflicile Toxin A & B (neg)UGI With Small Bowel (barium swallow) (neg)H. Pylori (2) (neg both times)Comp metabolic panel + CO2 (Very low alkaline phosphatase)CBC w/auto diff (5) (many, many different off values)CT scans of pelvis and abdomen (ovarian cyst found)Lipase, SerumLipase (Low, outside standard range)AmylaseBasic metabolic panelHepatic function panel (total proteins high)Hemoglobin A1CGlaidin AntibodyCeliac Panel (Was told it came out negative, had cut gluten entirely out for over a year when tested. IGA Serum very low.)CT Brain ScanBrain MRI (a year after brain CT scan, mentioned a "small posterior fossa arachnoid cyst vs. mega cisterna magna" that had gone unchanged for the past year. First I had heard about it)Anti-Streptolysin O Screen W Reflex Titer (2) (both positive, years apart)Strep Group A Culture (Positive)"T4, Free" (average value)Thyroid Stimulating Hormone (3) (average values)Basic Metabolic Panel w GFRStrep A Rapid Assay w/Optic (positive)Lipid Profile (low LDL:HDL ratio?)Lyme Antibody (neg)Rheumatoid Factor (neg)ESR (neg)C Reactive ProteinANA Screen (2) (First years ago positive, recent one neg)Uric AcidMany EKGs, one of which was in the ER where the doctor told me to see my cardiologist immediately due to the fact he thought there could be a possibility I have Wolff-Parkinson-White Syndrome)Event monitor (Found what cardiologist called "basic arrhythmia", though doctor did not listen to my concerns)Vitamin D (insufficient. I take multivitamins and eat fairly well, lots of veggies, so I was surprised.)And most recently:Urinalysis ("Large" amount of blood in urine, WBC present)Urine Culture (neg)I have been on every antibiotic known to man it seems like. I get recurrent tonsillitis 2-4 times a year. I am always battling infections of some sort.Living every day is a battle. The pain in my joints is immense. I can barely stay awake for four hours at a time. I get tunnel vision at work due to the pain and fatigue. I've had xrays of my back and hips to find that I have spine adjustment issues and a very shallow and high hip socket on one side, so that explains a little bit of my issues, but it doesn't explain everything.I've been tested for lyme, lupus (or so my doctor thinks. I think maybe she used the wrong tests, or didn't use them all), and RA. I have had constant positive strep tests, so I'm considering this to be an issue.I'm at the end of my rope and my budget. I rack up thousands of dollars of bills a year with tests and visits for the incidental issues, and I only work part-time for minimum wage. I cannot keep doing this.If anyone has any suggestions, please help.Hi,It is important that you give details as they relate to what you are currently experiencing. Your medical history is very important, have you had a complete physical exam by a doctor of Internal Medicine? Do you drink unpasteurized milk? Have you traveled or gone camping recently? Do you have young children, if so, are they ill. Have you been tested for Campylobactor jejuni? or Guillien Barre' Syndrome? With regard to recurrent sore throats, if throat cultures are positive for streptococcus, has your physician suggested removal of your tonsils? Lupus is difficult to diagnosis, and often misdiagnosed. Did they confirm a diagnosis of Wolf-Parkinson White, if so, what medication did they place you on? Keep a diary of any new medication you are given and any new symptom you develop after taking it. Also, taking antibiotics so often could be a problem. It's important to have a doctor you can talk to, and who will listen to you. Make payment arrangements if you can, but get the medical help you need. It sounds like you've been treated in emergency rooms, and that can make your medical history difficult to follow. If you have Wolf-Parkinson White Syndrome, you should be seeing a cardiologist regularly. Before seeing a doctor, write a list of current symptoms, and it might be a good idea to type a list like you did about to review past medical problems at the time of a complete physical exam, not a 15 minute appointment. You've documented your history well, but it's very important that you give dates! List all medications you are currently taken, or have taken over the past6 months, include dose and strength, and include over-the-counter medications. In reading your history, and I'm trained, it is impossible to tell what symptoms you are currently having, and those are what should be addressed immediately. You need a doctor that can spend some time reviewing past and present medical records. Laboratory results can become outdated in a week, as can scans and x-rays given your symptoms. Best of luck to you!Lindsay
    LindsayG125 4 Replies Flag this Response
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